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Opinions lads please

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User

Posted 03 Jul 2023 at 18:54

Good point lyn one guy who had the operation over 2 years ago is still using pads and one off the unhappy ones regretting the op but he may be one off the unlucky ones

User

Posted 03 Jul 2023 at 18:56

Hi decho I refused a prosectomy and went down the radiotherapy hormone therapy route and have no regrets would do it again tomorrow gaz 👍

User

Posted 03 Jul 2023 at 20:11

You mention me, Gaz. In my case, the HT/RT route was very strongly recommended by the MDT because I had a PSA of 31, which was considered to be significantly higher than the cancer found by the biopsy could account for, and so there was considered to be a high likelihood of undetectable spread into the lymph nodes surrounding the prostate. I therefore had "whole pelvis" RT to irradiate the whole pelvic region, not just the prostate, combined with six months of HT prior to the RT and 18 months after it. Four years on and it seems to have worked.

Cheers,

Chris

User

Posted 03 Jul 2023 at 20:16

Thanks for your reply Chris have looked forward to your informative posts since I joined the forum it's good to see you are continuing to do well like me after similar treatment long may it continue all the best gaz 👍

User

Posted 03 Jul 2023 at 20:49

Gaz and Chris, that’s great that you are happy with your decision. It’s not actually the HT/RT route itself that bothers me, as the outcome is probably similar…and I can deal with side effects for a limited time. I think my underlying fear is that like Chris my PSA was high( at 36 ) and they intended to do full pelvic treatment, but they couldn’t because there was too much risk of permanent damage to the bowel. So if there are undetected mets my options are limited as I understand it.

Derek

User

Posted 03 Jul 2023 at 21:23

Thanks decho I understand your predicament my psa was high at 24.9 and Gleason 9 but underwent pelvic radiotherapy before every session off prostate radiation can't understand why they couldn't give you pelvic radiotherapy as I must have been in a very similar situation can anyone else shed any light on why decho couldn't have similar treatment hopefully your radiotherapy will have sorted the problem anyway hope the epsom salts are helping thanks gaz 👍

User

Posted 03 Jul 2023 at 21:43

As Andy says, decision regret is never helpful. Most people are grateful the cancer is dealt with, by either approach.

None of us can know how things would have gone for us personally had we taken a different approach. I had surgery, and I am sure when I made the decision I hadn't fully realised how long it takes to recover. I think it was 2 months before I could do very much at all, 6-9 months before continence stabilised (I still had some leakage, manageable with a pad a day that didn't stop me doing all normal activities) and a year before erectile function recovered to a level that was sufficient though not the same as before.

However six years later I had biochemical recurrence. Would that have happened with RT? There is no way of telling, both have similar recurrence levels on paper and I can't tell what my personal outcome would have been. However having had surgery it was detectable much more sensitively from a baseline of zero, and could be and was dealt with by HT/RT. And having experienced that approach I can say that the immediate impact of treatment is nowhere near as traumatic as surgery, but that there are consequences at least in the medium term - 10 months from finishing I haven't regained the erectile function I had had previously, and continence is also somewhat worse. However I live in hope.

User

Posted 03 Jul 2023 at 21:53

Thanks for your reply j-b hopefully you are ok now just getting everyones thoughts on both treatments to help anyone through the treatment options thanks for everyone's replys 👍

User

Posted 03 Jul 2023 at 22:23

Originally Posted by: Online Community Member

Because a) although we are all laid out broadly the same, the bowel/bladder/prostate position is slightly different for each person, and b) it depends on where the tumours are actually sited.

In Decho's case, I think he said the onco decided that the bowel was laid in the path of the additional nodes that needed zapping. Fortunately, in his case, the doctors had originally been ambivalent about whether whole pelvis RT was needed so the decision not to risk it was perhaps more straightforward. It might be that, if whole pelvis RT was definitely needed, they would have chanced the additional risks?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jul 2023 at 22:26

Thanks for the explanation lyn it makes a lot off sense thanks for your continued wisdom gaz 👍

User

Posted 03 Jul 2023 at 22:30

A case can be made for and against each form of treatment. Those for whom it has worked well with minimal side effects and those experienced side effects for a short time are as happy as can be for necessary treatment. At the other end of the scale, those who need supplemental treatment and experience severe and ongoing side effects may well wish they had a different form of treatment. Men can weigh up the Pros and Cons and take different views so it can depend on who you speak to. One thing I will mention is that a lot of surgeons will not take on some cases,so these, sometimes tricky cases are avoided and are generally treated with some form of HT/RT, while more advanced patients have HT/chemo.as appropriate, As I have said many times on this forum, listen to what the MDT says and read up on the various forms of treatment. A good place to start is by reading up on your options on the 'Tool Kit' but don't assume your experience will necessarily be the same as a mate at your pub or a relatively small number in a group ,who may have significant differences.https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Barry

User

Posted 03 Jul 2023 at 22:33

I think Lyn got it exactly right, thanks for the explanation, you are a font of knowledge which is very much appreciated, as is the support of everyone on here.

Thankyou to All,

Derek

User

Posted 03 Jul 2023 at 22:47

great reply Barry you too have been a great help with your wise words for everyone 👍

User

Posted 04 Jul 2023 at 01:00

It is certainly much easier for people like me who get a strong indication from the MDT about which treatment to have.

Prior to my diagnosis meeting, though I had loads of tests, I was assuming it probably wasn't serious. At the meeting with G9, with 95%-100% involvement all cores , extra capsular extension and perineural involvement. It was clear that I wasn't a candidate for active surveillance. My next assumption was that surgery would be required, but the urologist, looked aghast. I'm pretty sure he was more concerned about his statistics, than me as a patient, but maybe I'm too cynical.

Anyway the only treatment recommended for me was HDR brachy, EBRT, HT. So that is what I had, if I had been given a choice I would have probably chosen surgery, but that would have been from a position of inadequate knowledge, because you only know what is right long after the treatment.

If the MDT are giving strong advice for a treatment it is almost certainly the best choice. If they are equivocal on treatment, you may as well toss a coin.

Dave

User

Posted 04 Jul 2023 at 08:35

Indeed, Dave - it certainly makes life easier when the MDT essentially make the decision for you! I was fortunate in that RT, which was the treatment recommended for me, was what I was personally inclined towards anyway, so it was an easy decision to make.

Cheers,

Chris

User

Posted 04 Jul 2023 at 10:56

I’m now nearly 3 months post op after being diagnosed in February. I was given 3 options - surgery RT/HT or Brac with a clear leaning towards either surgery or RT. Liverpool don’t do brac and I would have had to go to the Christie in Manchester for that. AS was not a recommended option. What swung it for me towards surgery was when I went to see the oncologist and when I asked what they would do in my position their response was taking onto my age etc then they would go for surgery to keep options open for further treatment if required. Can’t regret my option as hopefully it’s now gone and I can get on with my life albeit having to deal with the side effects which are improving. Everyone thought is different.

User

Posted 04 Jul 2023 at 20:45

Hi Gaz61,

I had the option of surgery or RT/HT. If I could have had RT on its own, I think I would have gone down that route, but they made it clear that I needed the HT with the RT. I had read about the lack of libido on HT, and I definitely didn't want that. I made it clear to both the Surgeon and the Oncologist that my sex life was VERY important to me. I had read that erectile dysfunction can be a problem but I had understood (incorrectly, as it happens) that it was likely to improve and probably be back to normal within 12 months. Well, I'm 12 months post-surgery and I still don't even have 'stirrings' in my penis. Plus, I had also understood (again, incorrectly, as it happens) that any incontinence was likely to improve and be back to normal within the same 12 month time-frame. Wrong on both counts.

The only advantage to the surgery has been that, with the histology report, I discovered that the cancer was Gleason Stage 3a (not 2, as the biopsy seemed to indicate). So, the surgery gave a more accurate picture. Also, as others have mentioned, if I do need RT/HT in the future, it's a little bit easier to have that after surgery, rather than before surgery (although that didn't figure in my calculations at the time).

Glad to hear that you're happy with your choice of RT/HT.

Best wishes,

JedSee.

User

Posted 05 Jul 2023 at 23:19

Great thread. Just to add my thoughts I have no regrets at all about surgery 6.5yrs ago even though my case might be coming back, but so far very slowly, and I have 60% ED except when standing up when it's more like 10%.

I was offered AS after template biopsy, LRP, RT/HT. My decision was based on being told my lesion was very close to bursting out making me very keen for action. Although post op it was downgraded from poss T3a to T2. Unfortunately Gleason was upgraded to 4+4. Actually I regard that information as valuable in my occasional pondering of where I'm heading and I wouldn't have got it without a prostatectomy.

I also enjoyed the idea it might actually be totally removed as I'm sure it is for many men, some 70% it's said.

I also had a bit of a fear about RT. At 67 I thought the chances of longer term effects undesirable, as RT can cause longer term ED and bowel problems and no doubt others. Plus the hormones, I still don't like the idea of those. I've now spent 74yrs being me and quite happy. I wanted to age naturally rather than having drugs effecting my moods and feelings and possibly appearance. A credible oncologist on YouTube says as you get older the effects of those drugs linger longer sometimes for years. All that said if I now need RT/HT I'll be happy to have it.

Lyn's points are a good list and I can go along with them although I also think many men are not interested in researching the internet or marginal debates and just want to get on with it. Also Andy's point is a good one - that dwelling on decision regret is definitely a bad thing. I was euphoric to be offered a much earlier surgery date than I was originally told and have only briefly wondered what might have been, a better result or a burnt bowel.

User

Posted 03 Sep 2023 at 18:10

Originally Posted by: Online Community Member

PS I note Decho's comment that none of the RP men in his support group regret their decision and I am surprised at that - the couple of friends we have who had RP have said that, given their time again, they wouldn't have done it. I wonder if Decho's group are a really lucky bunch or whether it is hard to admit regret in a group where evC'est la vie.eryone is trying to make the best of things?

When asked by an opinion pollster a person would vote one way.

In the privacy of the voting booth the same person would vote a different way.

C'est la vie.

User

Posted 03 Sep 2023 at 18:25

The definition of incontinence is a difficult issue. I have been using a small pad since my recovery after prostatectomy 12 years ago. Strictly speaking I am incontinent because if my wife hugs me I tend to leak!, but otherwise I can go a whole day without a leak. Occasionally I forget to put the pad in and only realise when I go to the loo or at night when I undress. At night I only need a flannel to catch drips. Did anyone want to know this?

Edited by member 03 Sep 2023 at 18:26 | Reason: Not specified

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

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